Pulsed Tarceva and Radiation for Lepto - 1272755

clyeh67
Posts:20

My husband just got diagnosed with leptomeningeal carcinoma. He was confirmed by his symptoms and a brain MRI. He started pulsed Tarceva 600mg every four days yesterday. Today I read an article that suggests Tarceva 1500mg weekly for lepto. I appreciate any input on this.

Also, I would appreciate your thoughts on radiation. My husband has no prior brain mets so no radiation in the brain. Is it effective to use radiation to treat lepto? Thank you very much.

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Reply # - January 26, 2016, 06:03 PM

catdander
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Hi, welcome to Grace. I'm so sorry that your husband has been diagnosed with lepto. I not sure of the trending thought on pulsed dosage so I've asked a faculty to comment.

I hope your husband benefits from treatment and does well soon.
Best of hopes,
Janine

Reply # - January 26, 2016, 07:50 PM

dr. weiss
Posts: 206

Pulse dose erlotinib of some kind, be it 600mg every four days or 1500mg weekly both have some published experience behind them for leptomeningeal disease in patients with EGFR mutation. I am not aware of any comparative data to say whether one of these regimens work better than the other.

By definition, leptomeningeal carcinomatosis means that cancer is in the brain. Inside the brain, there are fluid filled spaces and leptomeningeal carcinomatosis means that cancer is in this fluid filled spaces.

I don't know if it's the optimal thing to do (no one dose) but in my practice, I do favor radiation prior to starting the pulse dose erlotinib. my philosophy is that much as I don't like whole brain radiation, I fear the harm to quality of life from progressive leptomeningeal carcinomatosis much more than I fear that from radiation and believe that radiation helps.

Reply # - January 26, 2016, 10:16 PM

clyeh67
Posts: 20

Janine, thanks for the nice message.

Dr. Weiss, thank you very much for your answers about pulse dose Tarceva and radiation. I will ask his radiation oncology about whole brain radiation. Do you have your patients stop pulse dose Tarceva while doing WBR? Thank you very much.

Reply # - January 27, 2016, 10:55 AM

dr. weiss
Posts: 206

I do not have a strong feeling about whether it is optimal to keep patients on tarceva during this type of radiation. In my practice, I usually tend not to, but I'm not aware of high quality data to drive me to think that I really know which way is best.

Reply # - July 14, 2016, 02:47 PM

clyeh67
Posts: 20

Just want to do a quick update on my husband. It has been nearly 6 months since his lepto diagnosis. The results of his chest and abdomen CT and brain MRI scans taken this week show no progression or lepto enhancement, even though the cytology of CSF taken in June remains positive. He will have one more IT chemo and we hope that it will kill the remaining cancerous cells. He finished 5 IT chemo. He continues to take pulse-dose Tarceva.
He is doing well. He can walk without using a walker, although he suffers from fatigue, headaches, dizziness, loss of appetite, and numbness in his legs and hands. He is excited that his hair starts to grow.
Best,
Emily

Reply # - July 14, 2016, 06:15 PM

JimC
Posts: 2753

Hi Emily,

That's just wonderful news! Thank you for sharing your husband's success, and I wish him continued response to the pulsed Tarceva and IT chemo.

JimC
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Reply # - June 27, 2017, 04:55 PM

clyeh67
Posts: 20

I would like to update my husband's condition. It has been 15 months since his lepto diagnosis and 45 months since Stage IV diagnosis. His recent scans show that he is stable. He received WBRT, IT chemo, a VP shunt and has been on pulse-dose Tarceva. He is doing fine, although he has continued to suffer from fatigue, headaches, loss of appetite, and numbness in his left foot.

Boblovebeth, I hope that you could read this message. Your encouragement has meant a lot to me.
Best,
Emily

Reply # - June 27, 2017, 06:42 PM

JimC
Posts: 2753

Hi Emily,

Fantastic!! We're all so happy that your husband is doing so well. Thank you for updating and providing good news to share with the GRACE community.

Looking forward to many more of these happy updates!

JimC
Forum moderator

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